My Gift

June 19th @ 7:23A.M- I was getting ready to head to breakfast with Jon and the in-laws to celebrate early fathers day, then head to Jacksonville to see my cousins before they left town for a month. I was so excited about the day because we were going to the pool in Jax and I had been dying to get to a pool. But I got the call. I saw a Tampa number and realized that on a Saturday it must be "the call". It seemed surreal. It had only been 5 weeks and 6 days. I was told it could take up to a year! Oh well, we started throwing things in the bags and making calls all the way to Tampa. Everyone was excited and panicky...I was just ready and waiting to see if this was a false alarm or the real deal.
When we got to TGH all I kept asking was "has there been visualization?" Meaning, has the surgeon seen the donor lungs, and are they a match for me or not. No one knew until minutes before wheeling me into the O.R. My mother in law and father in law and parents arrived to see me before pre-op. I had some nebs to do, EKG, blood work, x-rays. I was even left in x-ray for awhile and got worried they forgot me! Turns out they sent transport on a wild goose hunt for me!I was waiting down there for transport and no one was coming and I kept worrying they were going to make the new lungs go bad because I was MIA! LOL...Finally they found me and brought me to pre-op. I didn't realize then, but I didn't have a lot of time for lovey dovey emotional goodbyes. I had people around me at all times-head to toe-hooking me up everywhere. We gave the O.R. nurses my camera to take the pics of the old and new lungs because I was real curious how bad my old ones would look, and how special the new ones would be. The nurses, and surgeon were so kind...encouraging...and really comforted my family, which comforted me. Literally 5 minutes before, Ginger peeks her head in and says "They're good!" That's when we all cheered! I got excited! I was ready...this was awesome! Not once did I think about not waking up, or dangers, or anything-I completely trusted this team and I was ready to breath!I actually remember being transferred from gurney to operating table with what seemed like 20 people rushing around me. It went pretty quick once I was out lol....
I woke up 2 days later to my father and husband looking down at me. I'm not sure if I was still intubated or not, but I remember Jon and Dad telling me how proud they were of me and that it was Monday and Sarge and Henry actually held their potty break 8hrs past their normal time. Jon said I tried to react too much and they had to put me back out. Go figure I would want to talk right away lol...I remember seeing Grandpa and Janette, and Bob and Cheri looking at me through a glass door...a lot of times people were crying. I hope only happy tears...because though I was uncomfortable-I was happy. Jon showed me pics of the new and old lungs. He said I started crying when I saw the old ones, so he took the pics away. They were black though-it was scary. I couldn't look at a piece of the old lung and see where air was going through at all. The docs later confessed that I was pretty bad off and may have not made it another 6 months-and I was the worst case of hypertrophic pulmonary osteoarthritis they had every seen. Scary. But my new lungs were beautiful. White, crisp clean edges, full. Like true angel wings. They look brand new.
So I spent 2 days on the vent, day 3 I was up and doing exercises at 15 and 20 minutes, and day 4 moved to a normal transplant floor. Once the chest tubes were out and my new lungs had some room to expand things got more comfortable. Although, there was a little pain I truly expected it to be a lot worse. I also expected to feel a lot weaker. Everyone (nurses,docs, family..) all seemed extremely impressed with my progress. On day 4 I was walking the halls. I skipped a crucial part!-coming off the vent.
I woke up to Dr.Haddad at the end of my bed in a chair saying "Ashley, you need to breathe. If you don't I'm putting the tube back in there." He was so calm I almost didn't understand what he was saying. I couldn't feel myself breathe. When I did, I made a horrible gurgle noise. It scared me...I was thinking I traded one set of junky lungs where I could cough stuff up to another set where I couldn't..Very much not what I wanted! After a bronch and some suctioning, and few days to give the vocal cords a rest I could feel some air in there! =) I was able to talk without the gurgle...and sit up for longer periods of time. I had to stay in here for 13 days. We were going to shoot to have the Nisan surgery 4th of July...BUT docs need their vacays too and wouldn't be back until after the holiday, so my docs said I could go home and schedule for a Bravo study and the surgery in a week or so and enjoy sometime at home. Real quick I'll explain the Bravo and Nisan. The Bravo pH study is where you swallow a pill attached to a thin tube that clamps to the inside of your throat. The pill stays and the tube is removed. All while your awake. The pill will measure the pH levels and severity of the GERD/reflux I have. Once this study says that it is severe I can have this Nisan procedure done. For the Nisan, they go in laparoscopically and put a band at the bottom of my esophagus so that I don't reflux and aspirate into my new lungs. They also have to move my stomach back above my diaphram so that the stomach will no longer have pressure on it, causing me to reflux/vomit. Until this can be done, I need to be upright pretty much at all times.
So I went home for 3 days, enjoyed my bed, my dogs, and a trip to the store...On Tuesday I had to come back to TGH to get the Bravo placed and get some blood drawn. We had to leave at 4am to be at Tampa by 6am, had my blood drawn and Bravo done and was home by 10:30..just about to lay down for a nap and we got a call from Tampa. My white blood cell count was 31,000...they like 10,000. I had to come back immediately for antibiotics. Now, the day before I was slightly tired, but of course I thought I was overdoing it like I always do..but maybe I was sick? My PFTs were going up, the only thing shaky was my weight-and it was expected because I was on 24hr tube feeds for 2 weeks. I had to adjust switching to real food in just a few days, my stomach had shrunk. When we turned around and got to TGH, Dr. Haddad looked kind of worried. He asked what I did, why was I not feeling awful? I had no clue-I felt fine-just tired because I woke up at 3 am (who wouldn't be!)..He then decided maybe it was a false positive, but was going to start me on antibiotics anyways and keep me here just so he could keep an eye on me until surgery. So- here I am- I turned in the Bravo this morning. I should get results tomorrow or Saturday, then we schedule the surgery. As of now, my lungs are "perfect", and they don't know why the WBC was high, but my RBC is low so I had to get a shot of Procrit (think this is norm though). They also are checking my stool for C.Diff, but I'm pretty confident its not that, because the diarrhea is gone, and I wasn't really hurting from it. I'll admit, this has been a LOT easier stay than most...no tubes out of my chest means I can lay on my side...and I can get out of bed a heck of a lot easier. But I miss people..sleeping regular hours, having dinner done and the house clean when Jon comes home...getting Dr.Pepper ICEES..but I LOVE breathing...I LOVE it...I'm already almost at 2 liters on day 18...and its getting better. My family has been better than ever and life has been more beautiful than imagined. I thank God, my donor, and my donor's family for giving my family and I a chance to be together-healthy. God is good, my doctors were made in His eyes and given His hands to help heal me. Every chance at bad that could have, maybe did, go wrong was corrected to a better standard than what was originally intended and for this I am eternally grateful. Thank you is not enough- I will live my life for myself, and now my donor. I want their family to be honored and my Angel to feel blessed that I am carrying their legacy on.